July 31, 2011

ISLAND GARDENING


who gardens on a beach?
me.
why?
no ticks.

who gardens on a beach?
me.
why?
because i can!

who refers to weeding as gardening?
me.
why?
because i lack a green thumb.

my big ol' pile of weeds

we were the first summer holiday visitors to stay at our friend's cabin on whidbey island (at the end of june). the cabin's "front yard" consists of a little man made sandy area before it then leads directly on to the God-made beach and ocean. the little front yard is where the fire pit is for cooking delectable chemical treats such as s'mores and hot dogs.


this year, the area was super overgrown with weeds. very dried up, dead weeds. seeing as this area surrounds the fire pit, it made me more than a little paranoid that one spark from the fire could set the whole area ablaze. so i started pulling up weeds...my initial plan was to just clear a safe radius around perimeter of the fire pit. uh huh. famous words from a perfectionist. like i could leave something half done - especially an unsightly mess such as this was.

so i weeded
and
weeded
and
weeded

i weeded for 2 days...
those stupid dead weeds just would not go down without a fight - they had a life and will all their own.
they just kept multiplying...eventually i had to concede defeat and "let it go" for my own mental health.

weeding from sun up til sun down

before i make it sound like i was working all alone, a solitary, shadowy figure highlighted on the horizon, i must acknowledge that my family labored by my side for SOME of the time. we all kind of got into a weeding groove and you know, as weird as it sounds, it was fun...it honestly was. it's rare for us to all be outside in the fresh air and doing something physical.

"air" rake

during our trip LAST year, parker was so profoundly ill, he rarely was able to venture outside. he spent most of last year's holiday either on the couch or sitting or lying on a lounge beside the campfire. this year, he still spent 2 full days inside on the couch but he also was able to spend quite a bit of time PLAYING outside...er, well, when i wasn't "making" him pull weeds.


last summer, was the first summers since 2007, where i was "well enough" to be fairly active. last year, i would have had the energy required to go on a murderous weed pulling rampage however my neuropathy/nerve pain was still excruciating and doing anything that required any repetitive upper body movements would send it sky high (even a task as simple as changing the sheets on a bed severely exacerbated it). so to be able to not only feel well enough to take on something as arduous as weed pulling but to actually be ABLE to do it is a very big deal. something to celebrate even! and even better than that? i was so super sore after wards - sore, as in how any "normal" person would be after overdoing it in the garden. profound. i'd welcome that kind of muscle fatigue and soreness any day.


avery's sea shell garden

while i wasn't able to do any gardening last year, i was going for walks everyday. (did that this year too). on one of my walks last year, i spotted the most amazing blue flowers ever. they were surrounded by much green vegetation and were such a vibrant shade of blue that they easily caught my eye. i paused to get a closer look and was shocked to see they had this incredible "spotted" patterning of blue, green, blue, green running along the whole length of their stems. they reminded me of something you would see in a dr seuss book...


it was the most unusual and incredible blue wonder to behold.

i raced back to the cabin, to tell the fam and i insisted that they just HAD to see them. i had been on a lengthy walk that day, so the blue wonders were quite a far distance from the cabin. far enough that we actually had to drive to the spot. the kids and graham were less than impressed to have to pile into the van to go see some 'stupid flowers'.

i just ignored their grumbling and guaranteed them that it would be well worth the time and effort.

"they're incredible!" i enthusiasitcally chortled, "just you wait! they are a natural wonder!"


my blue wonders

we drove to the area. even from the vehicle, their vibrant and unusual blue hue was easy to spot.
upon gaining a visual, my family's grumblings were quickly replaced with "ohhhhing and ahhhhing!"

"i told you guys it would be worth it!" i triumphantly huffed.

everyone hopped out of the van to get a closer look. always mindful of ticks, we carefully edged towards the vegetation, trying to keep a safe distance between us and it. graham daringly leaned in to get as close a look as possible

"there is no way those are real." he snorted sarcastically.

"what do you mean, they're not real?!" i indignantly sniffed, "of course, they're real, you ninny! how could they not be? do you think someone 'planted' fake flowers in the middle of the forest?"

"i'm telling you...that is not naturally occurring vegetation." he insisted. now the kids were starting to voice his doubts. " yeah, mom, i don't think those are real."

"that's ridiculous. of course they're real." i wanted to throttle them all.

graham reached in, grabbed the stem of one and snapped it in half
"stop!" i shouted, "what are you doing? you leave my blue wonders alone!"

the kids gathered around graham to investigate and examine my blue wonder. i mournfully peeked over the kid's heads to catch a glimpse of my now dead blue wonder lying in graham's murderous hands.
"i was right! they're not real." he gleefully chuckled. "they're spray painted!"

i silently gulped in dismay.
"that's ludicrous!"
i boasted with far more conviction than i felt "are you trying to actually propose the notion that someone came along and just randomly spray painted a couple of weeds on the side of a road?"

"nope, it's not random - it's called surveying and that someone is called a surveyor." they were all laughing at me now.


my blue wonders

i had a sinking feeling that he was probably right. but i wouldn't, couldn't, didn't want to acknowledge that.
"well, how in the world do they have that intricate blue and green patterning along their stems then?"
i brazenly challenged his surveying spray paint theory.

"they must have been sprayed when they were small. evidently their stems must grow out in a very unique way." he explained

"Uh huh! i TOLD you they were unique!" i smugly announced, "you just said so yourself!"



July 29, 2011

TESTING 1, 2, 3....



this morning i felt well enough to test out a recipe. me in the kitchen? laughable. ridiculous. ludicrous. are all words that come to mind. and me baking? scary. disastrous. fire. equally applicable thoughts.

sometimes the (possible) benefits outweigh the risks.

parker's weight has dropped dramatically in the past month. since his gall bladder attack he's lost about 10 lbs. he is now down to 69lbs. i'm more than a little concerned about it. but how exactly does one go about fattening up a kid who on top of having to eat (for the most part) wheat free, dairy free, and sugar free must now adhere to a low fat diet? how on earth is that possible - especially when the child's mother is a lost cause in the cooking and baking department.

anyhow, today i was feeling up to the challenge. we are all big fans of the island oat bar they sell at starbucks. deeeeelicious. i managed to find a sugar, wheat, dairy free, kinda low fat version online. we decided to test it out.

and guess what?
not only did i end up with an edible product - they actually tasted fabulous! and they were easy to make. even for me. of course, as simple as it was, we still almost ran into a complication...

i mixed them up no prob. put them in the oven. and then promptly forgot about them. i'm not that much of a space cadet that i forgot to set a timer... however, the timer concept only works when one remembers to stay within ear shot of said timer.
so the timer went off. and i did not hear it.

avery and parker heard it.
they turned it off.
but didn't think to let me know.

fortunately, the pleasing and comforting aroma of oatmeal and cinnamon wafting through the house summoned me to the kitchen...eventually.

happily, the oven was not aflame and our oat bars were not yet burned beyond recognition.


my island oat bars
find the recipe here: www.geniusbreadrecipes.com

the taste testers in this house gave them 2 thumbs up. they were very flavorable however the texture was slightly crumbly...ok, a lot crumbly. i'm thinking i might have actually underbaked them...but no one knows for sure because no one knows exactly how long we actually baked them for. of course, the recipe calls for milk and i did substitute that for almond milk. which may or may not have impacted the texture. i have no clue.

at any rate, they were yummy and have all been consumed and no one is showing any signs of food poisoning.

now that i'm all impressed with my successful baking experiment, i've been inspired to test out a few new things on my blog. it's a little antiquated and outdated and could use a bit of an overhaul
. little did i know when i started blogging about my fight with lyme that it would eventually grow to include the unthinkable - congenital lyme. who could've ever imagined that my battle with lyme and our family's journey would end up taking such an unfathomable turn. but that is exactly what has transpired. now, 2 years into both of my son's battles with this insidious disease, it's probably time my home page and side bars reflect that "my" fight has truly become "our" fight.

so, bear with me, as i test out some new looks and options over the next few weeks... i don't know how it will go and i'm a little worried (ok a lot worried) that i might end up frying my hard drive, losing some stuff or blowing up my laptop.
after all,

embed,
urls,
and
widget
are terms that are as foreign and confusing to me as
emulsify,
braise,
and
deglaze .

at any rate, here goes...testing 1, 2, 3...


July 27, 2011

EXTRATERRESTRIAL PREDICTABLY BARFALICIOUS BOVINE


extraterrestrial predictably barfalicious bovine
that's quite a mouthful isn't it?
forget saying it
imagine being it
i am it
i am an extraterrestrial predictably barfalicious bovine
shall i explain?

in order to do so, i suppose i have to back track a bit. i recently realized that i haven't actually posted a full blown medical report for awhile.i think the last major one was back in february! wow. it's been that long? that's crazy - and i'm not anymore! isn't that awesome? since february, we've had 2 in-office appointments with DR H, numerous phone appointments, 3 in office appointments with DR A (seattle doc), and many unscheduled phone calls and faxes to DR H to put out both minor and major crisis.

yes, a lot has happened, and a lot has changed over the last several months. in regards to my health, aside from the whole ET + Barf + Cow thing, it has been good. i think i have posted enough, either here but mostly on FB, about my barfing episodes. just in case, you've blocked it out or forgotten or don't follow me on FB, let me refresh your memory. i'll try to refrain from the more graphic, nitty gritty details of my barfaliciousness.

here's my very condensed version - which is difficult. it's hard to try to explain a phenom that makes little sense. (read the more detailed explanation here - a'barfing we will go) if you remember, my barfing is not nausea/gut related. my barfing episodes started at the end of october (2010). this was the day after i had a mondo seizure that sent me to hospital. since october, the longest time frame i have gone without throwing up is a 14 day streak.
sometimes i am lucid when it happens.
sometimes i am not.
right before i barf, i get a fuzzy feeling in my head - my head gets all tingly and numb (similar to the sensations i get right before a migraine starts) and then i get this really weird short cough, and then it starts. once it is over, i'm not overly lucid. the pressure in my head (internal head pressure) gets really intense - hard to explain that feeling. it is as if my head is expanding from the inside out. this in turns causes immense pressure to build behind my eyes. they feel like they are bugging out of my head and i have great difficulty focusing or seeing. it dawned on my the other day that my head feels how ET looks. big head. bulging eyes. neck too woefully long and thin to hold it up.


there is no rhyme or reason to why or when or even what is really causing it. it is not stomach related, it is definitely brain related. DR H believes that the original seizure triggered the wire connected to the barf switch in my brain and when the breaker shorts out, i barf. in fact, all my doctors, are pretty convinced that the barfing is a type of atypical seizure. my doctors have pulled out every tool in their arsenal to try and put a stop to it. meds have been stopped, switched up, or changed. this, that and the other has been tried. all to no avail. so far.

as the months have passed, there have been times where it's appeared to be settling down. about the minute we all think we've got it under control, it returns with a vengeance. at the end of february, my weight dropped to the lowest point it's ever been. when i saw DR H in office in may, he tweaked dosing on some of my meds and started some new ones and while it didn't stop it, it has finally settled into a fairly predictable pattern.

for example, unless i'm herxing, i only barf after 5pm. this means that whatever food i'm able to eat prior to 5pm, generally stays put...of course there are exceptions to that rule (that's where the cow thing comes in) as a result my weight has come back up to normal and stabilized. over the past 3 months, i've settled into a fairly predictable pattern of barfing. generally speaking, about every 3 days, at some time past 5pm, i can be found doubled over my porcelain bowl. if i am not at home, i prefer barfing anywhere but in a public restroom. this means i've thrown up along roadsides, in parking lots and behind trees. the week before a herx, the barfing increases in frequency to every single evening. this lasts about 5-7 days. again, only after 5pm. during a herx, i barf all day long, every day for 3-5 days straight. once the herx has cleared my system, i return to my "regular run-of- the-mill" every 3 days or so of barfing.

i've been nicely settled into this pattern for some time now. barfing sucks but at least it's predictable. just about the time it was becoming predictable, i started dropping words again. really bad. how do i explain word dropping or word reversal? it's like having your very own language. slightly extraterrestrial, if you ask me. lends itself well to the whole ET look a like thing i've got going on. so i speak but i'll leave out key words or i'll string together a sentence - which makes perfect sense to my ears but leaves the receiver completely confused.

for example here are a few from the archives:

"the fridge is in the chicken on the bottom thing."
translation:
"the chicken is in the fridge on the bottom shelf."

"i'm god is parking in the walk."
translation:
"i'm going to take the dog for a walk in the park."

"garsninf"
tranlsation:
"island gardening is fun"

and so on and so on and so on.
makes for some very interesting conversations. most of the time i'm rarely cognizant of the fact that i'm doing it. my only indication that i've said something odd is the puzzled looks, blank stares or raised eyebrows from those around me.
nice. i try to avoid talking to people who don't know me or the situation. most often it occurs in the privacy of our own home, clearly it's made for some pretty humorous moments. and "wow! mom! do you have any clue what you just said?" altho' taylor mentioned the other day that it's more the norm than not, and that he doesn't even notice it so much anymore. or if he does he can pretty much decipher what it was i meant to say. so, just so you know, if there ever happens to be an alien invasion, you can count on our family for translation services...


me and taylor at your service

the word thing impacts my writing as well. the frustrtating part with that is that not i aware of it while i am typing. sit always the discovery after the fact. i can be typing along, thoughts comeing rapindly and clearly, impressed with my claireetee and the speed and cleanse with which my thoughts are transalting from head to key board to scream. then stop i to take a breast and i'm contorted with a page of scuiggly red lines. irritating. and weird words litering the page. rather out of this worldly. is it the easily typed or grammatical errors that are the "norm" to misspell? no. not if you know my regular typing ability and proficiency. and oddly, the rarer, harder words i don't seem to have difficutly spelling - it's the fmilyer daily words of common everyday lanugewedge that stump me (albeit i have no idea they've got me stumped while i'm typing them - does that make sense?). i've purposely not editied this paritcular pargraf to give you a lovely smapping. honetlys. and judging from editing tme today, this is a good day. some days are worse than others. AND now you understand why i don't bother with punctuation or capitals in any of my posts ever...i would live in editing purgatory if i did.

anyhow, i've had word reversal issues before, but not for a long time. this actually came on very suddenly and with some severity - roughly over the past 6-8 weeks. this coupled with my barfing and my increasing head pressure got DR H pretty concerned that one of two things was now going on:

1. encephalitis
or
2. the lesions in my brain were getting bigger

he wanted me to have an MRI immediately.
DR A (my canadian doctor) put in an requisition for one.
on average, the waits for an MRI in canada are about 9 months long.
we were grateful when i was called and scheduled for one within about a week of the request going in...apparently, "suspected encephalitis" on the requisition greatly reduces wait time. we were very thankful to get in so quickly.

the MRI was done at the beginning of july
and
then we waited for the results
a long, nerve wracking 10 days
we weren't expecting good news
and
we couldn't believe it when the results finally came back...

we were nervously waiting in DR A's office. going in to the appointment we knew the MRI report stated that ischemic disease was present, lesions had been found and a follow up MRI was needed
it sounded bad
and
coupled with the barfing, fevers, head pressure, word issues i've been grappling with for the last several months, it sounded really, really bad
and
then DR A walked in and delivered the news...

"your lesions are shrinking! they are shrinking!" exclaimed DR A. "this is great news! i am so relieved!" (the look of relief on his face was tremendous - i would not at all been surprised had he leapt off his stool and begun to pirouette around his office)

he stayed put but excitedly continued, "
obviously, the overall findings aren't great still BUT the results from this MRI actually are an IMPROVEMENT over the last one. and these lesions are in keeping with your lyme diagnosis. and there is no doubt that they are smaller."

the lesions in my brain are actually getting SMALLER?

my brain nearly blew up when i heard that.
it's amazing news. it's shocking. as weird as it sounds, sometimes good news is as hard to digest and process as bad. especially when you are not in the least expecting it. it took a few minutes for it all to sink in. graham, myself and DR A just sat there looking at each other with silly grins on our faces. in the back of my head, i was still half expecting DR A to stand up and do the cha-cha-cha or a cartwheel or something. generally speaking, he's a pretty calm, low key, very conservative guy but he looked exuberant enough to do something a little bit crazy.

naturally, the downside of the super duper awesome MRI findings, is that my barfing still sort of remains a puzzle. once DR A came down from cloud 9, we re-hashed the barfing again; re-evaluating the symptoms, re-looking at the pattern of barfing and all it's accompanying weirdness.
nausea related? nope.
food related? nope.
med related? nope. nope. nope. and nope.
is it weird? yup.
weirder than you know. even what i barf up is weird. spare you the details (again) but hmmm, how do i say this in a restrained, diplomatic manner? i don't always barf up my most recent meal. i may have just eaten supper but it's breakfast that i end up regurgitating. strange.

DR A listened to it all again. and then he gave me a long, surmising look and said,
"maybe you are a cow."


oh can you believe it! i EXPECT smart ass commentary like that from DR H but not DR A!
i was rendered speechless...and so he cheekily continued...

"maybe you are part bovine! medically, that would explain a lot. after all, cows have 4 stomachs."

and then he started to chuckle
and
graham burst into laughter
and
i just crossed my hooves across my chest and mooed disdainfully at them both.


as distressing as the barfing is, at least it's predictable. in fact, there has been a general trending towards predictability since the middle of march. better yet, there has also been a general upswing in my overall health...

i'm doing relatively well.
my barfing is fairly predictable.
my herxing is fairly predictable. it's still no walk in the park but it is manageable
and
i've been able to maintain some semblance of consistency as a result.

i have been able to start a modified exercise program again - which i haven't been able to do since last summer. i began this in april. since then i have been able to consistently exercise 3 times a week. this includes 20-30 minute walks and light weight lifting. on a good day i can use 5lb weights and do 2 sets of 8 reps of bicep curls, hammer curls, tricep kickbacks, shoulder presses. on a rough day, it's a struggle to get thru 1 or 2 reps. sometimes i have to cut the whole program by half BUT the key here is that i'm maintaining it and consistently able to do some version of it 3 times a week.

i still struggle. some days i struggle to get thru doing the simplest of tasks but in a lot of ways, i'm really kicking butt. i have days where i just "live my life". some days it's effortless. EFFORTLESS. that's a really big deal. so much of living my life, even on a "good day", has meant gritting my teeth and dragging myself through it . even doing the most mundane, simplest and menial of tasks has required so much energy and effort. monumental effort. relentless pushing. therefore every time i do something, however small it may be and have it be effortless...that is a gift...and cruising through a whole ENTIRE day unencumbered by fatigue or a walloping whack of pain or not needing ear plugs, well that is worthy of celebration. sometimes i have to pinch myself to believe it's really happened. the newness of feeling "normal" is peculiar.

effortlessness is a very peculiar wonder.


~photo by my friend tammy herman -
who's incredible at capturing effortless moments



the general trend over the past 3 months has gone like this (on a month to month bases):

i have 2 pretty decent weeks per month - which include many effortless days...sure there are health "hiccups" during those weeks...i still barf, i have days where i hit that 3pm brick wall of fatigue, my CNS symptoms flare but for the most part, i'm up and at it all day.

sometime during the third week in, the red flags start. the barfing picks up. by evening, i'm comatose on the couch. i can function during the day, but it is a struggle, some days more than others, i push, i pull, i grit my teeth, i push some more to get through the day, i do what needs to be done, i try my best to plan ahead because i know what's coming next. the HERX.


i HERX every 4 weeks. bang on. so novel for it to be that predictable. for years, i've lived in terror of herxing. it is so horrible a thing to endure. and for the most part, i never knew when it would hit and when it would end. my longest herx lasted 3 months. herxing was terrifying. it was unpredictable. a mind twister and body snatcher. wretchedness beyond description. it is living death. never, ever did i feel like i had the upper hand.

over the last several months, there has been a turn around in my body's ability to handle herxing. it's finally detoxing more effectively. each time i've experienced a more manageable herx, i've gained a little piece of confidence in my body. i'm beginning to TRUST my body again. it can cope. it can detox. it can survive the unimaginable. it can have the upper hand. it will prevail. in honor of this, i've re-named herxing. herxing is now referred to as "spirochetal death row".


me this week in my spirochetal death row t-shirt

spirochetal death row is still grim
and it ain't pretty. but it ain't what it used to be - it still renders me completely debilitated but that is a dramatic improvement. spirochetal death row still involves fevers, non stop throwing up, joint pain, drugged out, spaced out fatigue, low level anxiety, sensory overload, inability to focus, concentrate, or interact with my world. too tired to think, feel or move
but that is so much better than what it has been. the physical symptoms were hard enough to bear, the brain stuff, and the psychotic episodes were horrendous. ativan used to be a way of life, a very needed survival tool. i've only had to utilize that tool, 3 times since march. 3 pills. that's it. and the general tending has been towards a short stay on death row. on average, it's been over and done with in about 5 days. and afterwards, my body is bouncing back magnificently fast.

this week i expected to herx. i'm at the 4 week cycle and it happened.
it started friday nite. hit with fury on saturday. today is day 5. this one's hanging in a little longer than i'd like. but it's been manageable. i've been barfing a lot more, and not been able to keep in food, liquid nor any of my detox meds - which i believe is impeding my recovery time. this time around, the only thing i've kept down in the past 4 days, is a couple handfuls of reeses pieces. how crazy is that? nothing else, no matter how bland, no matter how restrictive or selective the food choices, i've barfed it all up. bland, wheat free, sugar free, gluten free. up it's come. try this, try that. weak chamomile tea. ginger tea. sip of water. lemon water. plain water. etc. etc. etc. NOTHING stayed down and let me make this clear, I AM STARVING.
anyhow, yesterday, i got a very weird craving for reese's pieces
so bizarre
i haven't had those in a million years
they don't top my list of favorite indulgences
but
i nearly crawled out of my mind i was craving them so bad
i lay in bed OBSESSING over them
i could not get them out of my mind
and
so i got me hands on some (thank you to parker )
and
then i indulged in their gooey, peanut buttery, candy coated goodness
they were every bit as good as i imagined them to be
i crammed handful after handful into my mouth - it was not a pretty nor dainty sight... then half way thru the bag, it hit me...

who else has a big head, bulging eyes, long, thin neck and is preoccupied with reese's pieces?

video


i am ET

and what could be more peculiar than that?

i did NOT barf up any of those reese's pieces. not one!
in fact, they are the ONLY thing i've kept down i
n 4 days.

on top of that,
i quite possibly may have 4 stomachs
which makes me part bovine.


i am an extraterrestrial predictably barfalicious bovine


ET phone home
then
mooooo-ve over
because
this bovine is making a come back



July 21, 2011

WAIT AND SEE


yesterday was parker's appointment with the surgeon down at BCCH in regards to his gall stones. we were hoping and praying that the surgeon would recommend a "wait and see" approach. PTL! that is the approach that he recommended.

the results of parker's ultrasound (from his ER admission) showed that parker has 3 large gall stones. one was lodged in a bile duct. however, there is no evidence of gall bladder disease or inflammation. that is a very good thing. the surgeon also noted that his symptoms were "atypical" for a gall bladder attack. strange. a lot of his symptoms were consistent with a gall bladder attack however his pain and symptoms persisted for 7 days. it is unusual for a typical gall bladder attack to last more than several hours.

but that's not to say that he didn't have a gall bladder attack.
he did say that kids often do present with atypical symptoms. however, he felt like he couldn't say with certainty one way or the other. therefore, a wait and see approach was a best choice for right now. additionally, parker has absolutely zero GB pain currently. obviously, if he has a return of his pain or symptoms, than we need to contact the surgeon immediately and get him to the hospital. if one of the stones were to block the common bile duct, he is at risk for pancreatitis or liver issues. but there is a large percentage of the population that lives with asymptomatic gall stones.

so we wait and see.

the surgeon had never, ever heard of the IV medication that parker has been on being the cause of the formation of gall stones. he was very skeptical of this. that's fine. i wasn't there to dispute his opinion or experience. just trying to communicate what may or may not be relevant to parker's condition. stone formation in the lyme patient is well documented in lyme literate literature. i felt that that was important for him to know. after all, parker's health history is no secret. he has a medical chart 6 inches thick. certainly, how lyme impacts his body is relevant. however, lyme, in general and his diagnosis of it, is not the issue at hand. not at all. i wasn't there to debate lyme or provide 'proof' of his diagnosis. nor did i want to. i'm not up to facing down that monster anymore.

unfortunately, the lyme becomes an issue every time. no matter how hard i try to deflect it, they latch on to it and pelt away. sometimes, it's in an outright hostile manner. other times, it is in how it was yesterday - an undertow of negativity, an undertone of skepticism, an undercurrent of derisiveness. subtle, yes, but indisputably there. i don't know how to explain it and i'm really not up to going into detail about this particular experience.

what i will say is this...
the surgeon was not outright rude...he was pleasant enough - but that underbelly of a dismissively doubtful and skeptical attitude was present. without a doubt, IT was there.
however,
i also have no doubt that i am more sensitive to it. my psychological skin is thin. i believe that because of this my perception is slightly skewed. and just being at BCCH is a trigger point for my PTSD. absolutely, it is. and even if i'm not treated with outright disrespect, i'm still gonna bleed.

i was hoping that the subtle "questioning" of parker's LD and the dubious attitude was lost on parker. the surgeon had a good repoire with him. it is evident that he is good with kids. he explained how the gall bladder works and what happens in an attack really well. they talked a little bit about basketball (parker's number 1 passion). the surgeon told him if he did have to have surgery that he would actually be able to jump higher. that was cute and got a laugh from parker.

so i was very hopeful that the darker aspects of the appointment would be outshadowed by those lighter moments. i was hopeful, IT would have gone unnoticed by parker. i kept telling myself, 'shan, just let it slide off you like water off a duck's back. it's okay. it's okay. let their problem, be their problem. focus on the positive - after all, you've been given great news - no surgery right now!'

so i pasted a smile on my face, turned to parker and gave him a big hug and a celebratory "high five" for no surgery. his response was less than enthusiastic and he was quiet as we left the office. i just hoped that it was because he was tired.

no sooner were we out of the surgeon's office, when he just crumbled to the ground.

"what's wrong buddy?"
"i just feel really sad mom. really, really sad" he said, with tears in his eyes
"why?"
"i dunno how to explain it, mom...it's just that it makes me feel so sad to keep hearing doctors say that they know nothing about lyme disease but then they act like they doubt my diagnosis. if i was a kid with cancer, and i had to see him (this surgeon) would he have kept asking what kind of proof we had to prove that i had cancer. would he act like he didn't believe i had it or act like my cancer doctors didn't know what they were doing?"

so. yeah. the skepticism was not at all lost on him.
that hurts. as soon as we got home and i could be alone, i cried.
and
i hurt for him.
it all washed over me afresh as i climbed into bed last nite.
i cried myself to sleep.

i hurt that he was subjected to this crap again.
at times like that i feel so helpless.

he deserves better.


July 19, 2011

I AM A POSSIBILITY


avery spent last week at camp
it was the longest week.....ever.


all packed up and raring to go!

8 days. that is a very, very, very long time. after all, she's "only" 8! it was the longest we've been apart. sure, we've been going to SF to see DR H for several years now, and most of those trips we've left her behind, however those trips are only 4 nights and we can talk to her every day and she's 'safe' at home in familiar surroundings with my parents and graham's mom. this was 7 whole nights in an unfamiliar setting and no real contact! (altho' the camp did have a blog - and you better believe i relentlessly stalked that site hoping to catch glimpses of my girl and hear snippets of what was happening!) even so, i don't know how we survived! it was very quiet around here.


and away she went...without even so much as a backward glance!

yes, it was the longest week ever...for us anyhow. she did just fine. we missed her like crazy... apparently she only missed the dog.

when asked if she had missed us, she replied,

"no, not really. but one day i just burst into tears because i was missing harrison so bad. i was so worried that i was starting to forget what his beautiful furry face looked like."

maybe if i stop waxing my upper lip, she'll be worried about forgetting my furry face too.


video



the camp she attended is a salvation army camp. camp sunrise. several weeks before she left, she overheard me telling someone over the phone that "avery is getting to go to salvation army camp this summer". immediately following my comment, i heard a sharp intake of breath and two very huge blue eyes peered around the corner at me and she screeched,

"what? you are sending me to boot camp?"

ah yes. in this house, all things associated with army are immediately associated with the military type of army. it was a cute, funny mishap! boy, am i glad she spoke up! can you imagine if she hadn't? poor kid!


army camp was actually a performing arts and music camp on gibsons. drama and singing are right up avery's alley! she was very, very excited to go and hoping that it was going to be like the disney movie, 'camp rock'. i'm pretty sure it proved to be. the week long camp was wrapped up with a big performance by all the campers for their families.

the glee girls

avery did a 'glee-inspired' dance and singing routine with a group of girls and then sang and had a little part in the big musical. it was so exciting to see her and we were so super grateful that it was possible for her to go to camp.

first glimpse i caught of her from the camp blog
i nearly fainted i felt such relief to see that happy smile

there are a lot of folks who made it possible for her to go. and we are so appreciative. thank you. a lot of those that contributed funds to send her have remained anonymous - thank you to each and every one of you.

and thank you to my friend gill. who not o
nly spear headed the 'send avery to camp' campaign but also took on the impossible task of being the cabin leader for a gaggle of 8 year old girls...and on top that, she had all 3 of her children, age 8, 6 and 3 at camp with her. you truly rock gill. i don't know how you ever survived. we are so grateful that you would give so much of yourself to make this experience possible for avery.


gillian and her babies

again, thank you to all of you who made this special experience possible. as we were sitting through the week ends musical performance and listening to the lyrics being sung by the kids, i got so emotional. the skits had great meaning and the words of the songs were so meaningful. i am just so grateful that my daughter spent a week immersed in that. i hope
she absorbed it and soaked it in like a sponge.

what a gift. i hope she never forgets and never doubts what a gift she is.

avery's online singing debut:
i am a promise...i am a possibility




video

July 12, 2011

CAT ATTACK


we had to rush parker to hospital last thursday.
we spent 8 hours in hospital
and
after several tests, we learned that parker has a cat in his tummy.

note: you do not need to be a radiologist to see the cat in his scan:

parker's belly scan

you see the cat face, don't you?

ok
a little wry goertzen humor
but, seriously, that is pretty bizarre and cool.

parker began having abdominal pain in the upper right area of his rib cage (RUQ) on tuesday evening. by wednesday it began to build in intensity and by wednesday night he was having significant shortness of breath (SOB) and his abdominal pain was very intense. we talked about taking a trip to the ER but we hate, HATE, hate going to the hospital. and so does parker. it is terribly upsetting for him and he does not feel 'safe' while he is there. sad to say but the reality is that he has heard too many doctor's tell him they can't or won't treat him or don't know how to help him. that has left it's mark. too much water under the bridge - so to speak.

we decided to wait it out.

when he awoke thursday, the pain had only intensified and he was having great difficulty moving around, and when he did move or try to walk, he doubled over in pain and his shortness of breath was worse. it was significant enough, that he WANTED to go to hospital. given the level of pain he lives with on a daily basis, we took that very seriously. we put in a phone call to DR H and based on parker's symptoms, DR H told us to get him to the hospital ASAP. he was very concerned about liver and/or gall bladder - there is a high incidence of gall bladder issues associated with lyme infection.

we opted to take parker to a local area hospital rather than the children's hospital (BCCH). our experience at BCCH has rarely been easy. like i said before, too much water under the bridge. i want to preface this with a "we do not think all doctors at BCCH are horrible." yes. there are several i would like to punch in the head, ahem, but it is very important to me that me venting my frustrations does not come across as " a crap on BCCH" mentality.

we do not think all doctors at BCCH are "bad" nor that they are all in some sort of conspiratorial mind set against us personally (albeit, at times it has felt like that) and we work very hard to help parker understand that HOWEVER our experiences with most of the doctors we have been in contact with there in regards to his condition and LD diagnosis have been either hostile or indifferent and all have abdicated responsibility for his care. that is our experience. we have had encounters that have made our blood boil, have frustrated us and have grieved us to tears. so why, in a way, am i defending them? i guess i feel the need to still hold to the ideal that at the core they are well intentioned, caring, compassionate folks. certainly that is the experience of so many. while our experience speaks other wise, i do acknowledge and am profoundly grateful that we have had some incredible medical professionals, namely our canadian GP and countless nurses, who have and are supportive, caring and countless times have gone to bat for us.

okay.
now, that i've cleared up the fact that i'm not trying to be "catty" about BCCH, and i've blown off some steam, i'm nearly ready to "re-tract my claws", and get back to this issue of the cat in parker's belly.

given parker's condition when we arrived at the hospital, he was seen pretty quickly. naturally, the doctor was not familiar with lyme and had never heard of babesia (which is parker's primary diagnosis). we expressed our concern about the possibility of this being a gall bladder issue. we took care to be casual about mentioning DR H's recommendation that parker undergo an ultrasound. (he had faxed over his recommendations as far as what he wanted the doctors here to test for.) but, umm, yeah, waltzing into a canadian hospital with an american docs requisitions requires some diplomacy. egos are fragile...and i'm not so brazen as to think or insist that DR H knows better than any one else - but given that lyme is so "rare" here, it's not a huge leap to suggest that he has a lot more experience with it.

he also has the advantage of knowing parker's complete and very complicated health history - something an ER doc doesn't. however, he is at a disadvantage in that he hadn't physically examined parker.
the ER doc did not agree that parker's issue was gall bladder. based on her physical exam, she felt it was likely that he had pneumonia or liver issues. certainly i'm not a doctor and given his symptoms of SOB and RUQ pain that was a reasonable assessment. we did not push the ultrasound issue at that time.


parker was sent for x-rays and had bloodwork done.
the x-rays came back normal. no pneumonia.

his blood work came back flagged - showing he had some sort of infection. but the doc said she didn't know if that was due to a possible viral issue or related to his lyme and babesia infection. again she re-iterated she knew nothing of lyme and babesia.

again, we asked for an ultrasound
she refused
yup
flat out refused

she said if there was a gall bladder issue, than his liver enzymes would have been elevated.
hmmm. i was hospitalized with acute gall bladder pain. my lab work came back normal. no elevated liver enzymes. but based on my symptoms (which were the same as parker's) i was given an ultrasound and lo and behold, ended up rushed into emergency surgery.
hmm.
i let the cat have my tongue and kept those thoughts to myself and just diplomatically re-iterated our request that he have an ultrasound done.

it was frustrating because she kept interrupting us and talking over us. we did not feel like she was hearing anything we were saying.


she said that gall bladder issues were rare in most children.
true.
but we tried to explain that,
"parker is not 'most' children. his disease puts him at risk for developing gall bladder issues."

she continued to insist that she didn't think that this was a gall bladder issue. and insisted that an ultrasound wasn't necessary. i don't get that at all. not at all. gall bladder aside, why in the world is an ab ultrasound on a patient with acute abdominal pain not be considered a useful and necessary tool of inquiry?

finally, after several attempts to try and get our point across and being repeatedly interrupted, graham said,
"would you please let me finish?"

we re-iterated our concerns and that these were shared by parker's lyme specialist as well. and then we very firmly insisted on an ultrasound. for the 5th or 6th time.

i think she finally got the hint that we weren't gong to let this go.
she said she would discuss with radiology whether they felt it was necessary for parker to have an abdominal ultrasound done. and maybe, she would arrange one to be done as an outpatient at a later date.

here's the thing, i'm not disputing that her opinion wasn't credible or plausible but on the other hand, our request was not unreasonable or non-sensical either. it is not like we were saying,
"hey, our kid has a headache, could you pls x-ray his foot?"


the child had majority of gall bladder attack symptoms - acute RUQ pain radiating into stomach, nausea, shortness of breath, mild diarrhea, loss of appetite, pain intensifying in evening, doubled over in pain when he tried to walk or stand, nothing alleviated his pain...etc. etc.

helllllooooooo???

she insisted that it was highly unlikely that this was gall bladder associated. that he either had a viral flu or that his pain was due to tendon/ligament strain across his rib cage.


i do not know how i did not leap across the bed and strangle her. seriously.

she eventually returned and said that the radiologist would do an ultrasound immediately
thank goodness
then she introduced us to a new ER doc because her shift was over.
good riddance.
and okay, i have to admit, i told parker that i almost hoped that they would find something wrong with his gall bladder...a sort of twisted vindication - all at my poor kid's expense. but hey, i'm human after all.

parker had the ultrasound done.
and then we waited
and
waited
and
waited
and
waited for the results


we had now been in hospital nearly 8 hours
and
parker had not had anything to eat or drink in about 24 hours
and
he was reaching his coping capacity.

graham went on the hunt for a nurse to find out why it was taking so long to get the results. the response to his inquiry was

"oh, we had to call in a surgeon. he's here now, so i'm sure he will be with you shortly."

a surgeon? what the hek?
ahh, can you say heart attack
and
can i say...

"i told you so!"

parker has gall stones. 3 big ones. and a bunch of little ones.

the surgeon was lovely. (he was bald. i like bald) ha ha. also, lovely as in nice and caring. he said it was very, very rare for a child to have gall stones. he wouldn't operate on a child nor did the hospital we were in operate on children. that has to be done at BCCH. bummer. argh. we were so hoping to avoid BCCH. the surgeon said that he would be referring parker's case to surgeons at BCCH.

today, we heard from BCCH and he has an appointment scheduled with the surgeon on july 20. i guess we'll know more as far as if he'll need surgery or not at that time. as it stands,
parker's pain has subsided in intensity. he does still have it when he moves around too much. he continues to have significant episodes of SOB however that can also be associated with LD and co-infections too - so the SOB may or may not be related to his gall stones. currently, he has had one episode of blood in his urine.

since this all started we have been in touch with DR H several times. prior to this, DR H had parker on a medication called actigall for his gallbladder. DR H has now upped his dose of actigall and prescribed some other meds to provide support to his gall bladder. sometimes the formation of the stones can be a side effect of one of the IV meds he is on - however, in medical journals, gall stones as a side effect of this medication is listed as "patients have a less than 1% chance of developing gall stones." the risk is slight but as a pre-caution, that medication has been stopped for the time being. if the stones are related to this IV med, than there is the possibility that the actigall and other meds will help to dissolve them. it is not unheard of for LD patients to have complications with their gall bladder. sometimes due to the medication but also there is correlation between the fact that lyme can infect and wreak havoc on any organ or system in the body. add to the mix that gall bladder issues also tend to 'run in families'. lucky parker, we have a family history.

you can read HERE about my particular issues with my gall bladder.
RIP FELIX.
yes, i named my gallbladder post mortem.
(read about felix HERE)
why?
because we are weird like that.

naturally, parker has decided that he will name his gall bladder too.
but, only, if he has to have surgery to remove it.
if so, than he will name his gall bladder "brad" - as in brad marchand of the boston bruins.
gag
cough
sputter
we don't like boston
and
we do not like brad at all. not at all. a totally annoying, cocky dufus - we would not be sorry to see brad go. ha ha. that thought has helped parker cope with the idea of an impending surgery. it also helped him feel profoundly better about the possibility of surgery when taylor told him surgery can be used as a sort of chick magnet.

"well, parker," taylor said, "afterwards, you can show girls your scars - chicks totally dig that kind of thing."


the thought of that had parker grinning like a cheshire cat.
oh my.